The Unrelenting Tide

In 2011 a tidal shift took hold of our BB. A disease became an ebbing tide, slowly taking my mother piece by piece out to sea. A sea that became so angry and violent there was no chance of rescue. There would be periods of slack tides, and even a glimpse of the water rising and toying with our hopes that she had returned. But each day it carried her farther and farther away with its relentless pull. This disease decimated her motor skills, erasing any memory of how to cut a rug to Van Morrison with my father. She could no longer drive to get her caramel macchiato, much less hold a caramel macchiato in her hand. Little bits and pieces of the intricacies that made her who she was slipped under the dark waters never to be seen again. All in seven years.

This is what Alzheimer's does. It takes. It steals. There is no resistance. There are no life preservers. No Coast Guard. While it feels like an ebbing tide to outsiders, it is a rip tide to the hearts of loved ones. The family survives only with the expertise of the Alzheimer's Association, Memory Care, Hospice, support from friends and family, and from those that have lost their own to this unforgiving sea.

Grief ironically enough is also its own tide. You pray for the slack tide so that you can resume your life but it is rare, grief is ever present and always moving. It can be slow enough to allow you to miss your triggers, or it can be a tidal wave of emotions over seeing a grandmother with her family at swim lessons. A grandmother filming her grandson. She looked to be older than BB and could still use a phone. I sometimes get perplexed when I see people older than my mother doing things like driving, feeding themselves, shopping, using technology. Simple every day tasks my mother couldn't do in her mid 60's.

All I have remaining are stories told to me through her belongings. Her rosary found in the back of her dresser drawer, lip gloss tubes, expired licenses, seventy eight pairs of mismatched earrings, her favorite boat shoes, that perfect yellow top from Talbot's, blank greeting cards, matchbooks and letters.

And my own memories of her. For now. What if Alzheimer's takes those from me? What if Amelie and Ford have to watch my deterioration the way I experienced BB's? What if Amelie has to help me use the bathroom, bathe me, dress me, put me in a nursing home, listen to me scream obscenities at her for a four hour car ride. These are real fears. I haven't been able to start fundraising this year because I haven't been able to write. Is it because I don't have any more stories about my beautiful mother or is it something else? Is my mind slipping?

There is STILL no cure for this disease. No prevention. No miracle drug. Only emails and articles about a trial with mice somewhere that might have shown something.

Please consider donating to our Krewe BB in this year's Charlotte's Walk to End Alzheimer's. We HAVE to end this disease. We have to give hope to MILLIONS, yes Millions, of adult children that have been through the hell of watching a parent die from Alzheimer's.

Katharine's Walk Page HERE

Hints of Spring and Reminders of Hospice

This past year has been a blur. But this stretch from Christmas to my Mom's anniversary has been cold, dark, very damp and well....just sad. It's a stretch with no major holidays except Mardi Gras and if you aren't in New Orleans you are just reminded you aren't....well....in New Orleans.

These days the stretch of our Hospice care is replaying in my mind every single day. Was this the day I went up there? Was this the day she smiled? Which day did we begin to stop feeding her? Should I have gone up there more? Daffodils are blooming just as they were at the Elizabeth House we moved her to. An abnormally warm sunny day reminds me of the when we all sat outside her patio and snuck in a much needed bloody mary. Unannounced flurries take me back to the morning of her funeral when it snowed in Asheville.

I think because my birthday is literally five days before her death; the anticipatory countdown for March 14th is now also aligned with her anticipatory decline ending on March 19th. March in the past was for visits from mom and dad. She made birthdays a big deal. Not with lavish gifts and facebook posts but with party planning, thoughtful little touches, hugs and attention. They would come to town bearing too many gifts, flowers, candles, red beans from the freezer, and we would do our annual boozy lunch at Roosters to watch the ACC Tournament. Mom would help me decide on how to spruce up a few rooms, Dad would fix this and that, hang these and those, and they would leave my house a little more beautiful than when they had arrived.

If you think I'm being dramatic it really is just part of my personality. My Kangaroo Court punishment back in the 90's (a camp thing) was that everything reminded me of something else. This is preschool soup! I smell rain coming in 30 minutes! Definitely the same hairspray as Mom's AquaNet! 

Everywhere I look signs of spring remind me of Mom. I hear the birds outside singing and the Rufous Towhee says "Drink your Teaaaa". My mama taught me that. My parents used to fix cocktails and have me walk around their garden with them quizzing me on all the flowers beginning to bloom. Crocus were always first and usually met their demise from a late snowfall. Then the daffodills, tulips, dogwood, iris, I could go on and on. So many nights we would run outside with sheets and heavy rocks to save our plants from a Dogwood Winter. Now I have her iris in my garden. I have a gigantic Sweet Olive that when it blooms smells exactly like walks in the Garden District I took with my parents during our few visits back to their hometown. 

I'm an empath, and a pisces, and someone so in love with routines and traditions and memories. I should busy my mind and throw myself into exercising or reading or organizing but the weight of what we went through just a year ago is heavy and I am tired. I miss her. I feel like the John Pavlovitz article in that everyone has moved on and I have not. You don't get over a death, you just learn to live with the pain. 

       "But if there’s anything I would tell you, as someone who’s walked through the Grief Valley, is that the time your presence is most needed and most powerful, is in those days and weeks and months and years after the funeral; when most people have withdrawn and the road is most isolating. It is in the countless ordinary moments that follow, when grief sucker punches you and you again feel it all fully."

I miss my Mother. Even the bed-stricken, mumbling, agitated, docile, almost unrecognizable version she became. I miss holding her hand, brushing her hair out of her face, and the tiny flash of recognition I could see in her eyes when I would come into her room. Nobody loves you like your mother. Not because they can't, but because they didn't carry you in their womb for almost ten months. Because they didn't have your heart beating inside their body. Because that love is once in a lifetime and unique to her.

Marie Kondo + Tidying + Grief

I have had the Marie Kondo book on my bedside table for years. YEARS. I have a LOT of books on my bedside table I would like to read. I just never get to read. I think I read 1 book a year at the beach. I'm a heavy sleeper (or I was) and by the time my head hits the pillow I'm out. (Thank you Melatonin gummies)

Anyways, unless you have been living under a rock you know all about Kondo's new show on Netflix, tidying up.

I have OCD but no time. My house seems tidy but don't open any doors or drawers or look in any corners. The hard truth is we don't have a playroom and our formal living room is my office, so we are out of creative space for kid stuff. That's an entirely separate post. I have been using Marie's method to slowly get out some of the stuff we have accumulated over the 12 years we have been in this house. I do like her idea of thanking something before giving it away. I saw the Brave Little Toaster too young and I sometimes think my "stuff" has feelings. Yes I'm crazy. Yes I sleep with a baby blanket. Yes I'm a total SAP.

I leave Netflix on in the background while I work and the episode about the widow started. I cried most of the way through. And when she began her work on his pile of clothes? Sobbing. And can I just say her kids are total assholes for not helping her through this process???

When Mom moved into the nursing home we got rid of a large amount of her clothes. Things she couldn't fit in anymore, things that were too complicated to get on, and things she had bought in the more advanced years of Alzheimer's while she still had a check card. For example: Team Edward shirts and the stuff at Chico's that even Michael Phelp's mom wouldn't wear. Yep, Mom was die hard team Edward.

My brother, father and I took about 10 huge garbage bags to our Church in Asheville for their crisis assistance ministry of all BB's purses, shoes, extra clothes. It was cathartic as we laughed at things she had bought, cried at some of her favorites, and kept the most special items. Mom was a giver and I know she would love the idea of other women enjoying her beautiful things.

When Mom died last year I took home those most special items. But I should reclarify that and say mostly special items. To this day I am still having a hard time of getting rid of her things. I think I know in my heart I should save maybe 10 items? But what about all the other cute cord jackets and long tunic tops she was so famous for? And looked so chic and adorable in? She had a tinier build than I do so lots of it I can't wear. I have her first pair of Kate Spade's. That was a big purchase for her and I.....she wore them to my rehearsal dinner. And her first Tory Burch Reva's are waiting for Amelie. 

I just don't want her to go. I know she is gone but once all her clothes are gone her scent is gone. I think it is the time of year we are entering. We were literally on BB watch at this time last year. She was in Hospice at this time but not yet at the Hospice house. 

As we approach the year mark I feel the pressure to move on. To begin my life without always bringing my mother up. But here's the deal: I can't yet. I watched her die for seven years. We went through a heartbreaking and agonizing process of watching my mother's mind die. Alzheimer's is brain death. And since there is still no cure I'm not going to stop talking about her. Not until we find a cure. For those friends of mine that have been through this, how did you reduce the amount of "things" you held onto? 

I want to leave you with this amazing company that I have been cyberstalking for years. I think I have finally picked two pieces to send but it has been hard to choose. 

Little Grey Line is in Raleigh and she creates the most beautiful works of art with clothing. Here are just a few samples. I think Amelie will have a new beach dress for this summer and Ford/Kody/Wilder will have new bow ties. *If* I can narrow down my choices!

Six Months

My beautiful mother died six months ago. I wish I could say it has gotten easier, but if anything, life has gotten so much harder. 

The moment she died... and every second leading up to her funeral.... was planning. And in some crazy way it was enthusiastic planning about a celebration we knew was coming. The Jambalaya was on the stove, the friends on the road, her monogrammed napkins ordered. We were able to see so many people that she loved and in return felt their love for her. We reminisced, toasted, cried, laughed. It was absolutely perfect.

And then I came home.

And then the days and months that followed became quiet, and lonely, and I became angry. I don't have any new BB stories, videos, pictures. The amount I have is finite. I can't hold her hand, stroke her hair, see that almost distant twinkle in her eye. Read a text, or an email, or hear a voicemail. I only have one recording of her voice singing "Show me the Way to go Home". I can't hear her mutter I love you one last time. Amelie will point at her picture and say, "your Mommy is in heaven." 

This disease manifested itself in my mother's brain and slowly, over the course of seven years, ripped every shred of her being away. 

It began with little things, missing words, getting lost, paranoia seeping in. 

Then major paranoia, inability to do simple things, anger, lots of anger at loved ones. Mostly loved ones. 

Then it took away her freedoms. To drive, to work, to type, to read. To garden, to dance, to play solitaire.

Then it took away her basic necessities. To speak, to hug, to walk, to talk. To recognize us.

Alzheimer's doesn't hold back. It will dissolve every single molecule that built the person you loved. It will make you watch as they can no longer use the bathroom, as they entertain crazy fears in their brains. As they blame you for the most ridiculous things. As they forget who they are, who you are, what anything is for. They will drink hand sanitizer, they will wash their hands in the toilet, they will blame things broken in the house on bears. BEARS.

I watched this disease do this to my Mom. I watched even before her official diagnosis in 2011. I watched after diagnosis as her test numbers went down, as her dependencies went up, as we lost her day by day and second by second.

She was taken from us not by a Tsunami but a slow eroding merciless tide and we were helpless. 

I miss her every single day. I miss her so much now with the holidays coming. I can't go into a HomeGoods without sobbing at the seasonal decor. I need her in this rough exhausting phase of motherhood/wifehood/livelihood. How did she do it all? How did she do it all with a smile on her face and fresh flowers in the house? How did she always look beautiful and smell like Chanel? What was her secret? What did she not get to tell me about how hard and wonderful her late 30's/early 40's were? 

It is unfair what this disease did to her. And to us. And to the entire community of people that loved her. She should be here, letting Gumbo up on her bed. Dancing with my father on their deck, helping me decorate for the holidays or just hugging me. Holding my hand. Stroking my hair. She should be at Jazzercise with her friends, at Thanksgiving at Chipmunk Hill. I miss her touch. The soothing touch of a mother to let you know it will all be okay.

She should be here. And Alzheimer's took her from us. 

There is still no cure. And still no prevention. This is why I walk and why I obnoxiously ask for money every single year. I won't stop until there is a cure. 

My Walk donation Link:

http://act.alz.org/site/TR/Walk2018/NC-WesternCarolina?px=6247682&pg=personal&fr_id=11364

The "In Memory Of" Flower

I apologize for my silence. I have been in grief witness protection. AKA wine lockup. I haven't been able to articulate how this feels. I can partially blame my stellar public school education for my lackluster vocabulary and dump the rest on being a working mother with two and a half kids, a dog, a lagging social life, and summer schedules. 

The truth is; this doesn't get better. It changes. But it doesn't stop. There is no stoppage of unrelenting grief. It alters itself to fit into your lifestyle but it doesn't go away. It permanently changes your personality's chemical makeup. I am not Katharine from 8 years ago. We are unfortunately not the crazy Boylan family you knew and loved. We are different. We are still here, but we are forever changed by this disease.

I have walked in the Charlotte Walk to End Alzheimer's for 6 years. This will be my 7th. It began with me and Mom in symphony park hoisting our yellow (caregiver) and blue (Alzheimer's patient) flowers. Lunches at Roosters to celebrate our team. Matching shirts. Boozy afternoons on the back porch implementing our fall planting schedule. I carried this torch with and for her. 

This year I will hold a purple flower. The "In Memorial" flower for those that have lost a loved one to Alzheimer's. 

We have lost a blue flower.

We have lost BB. My mother. My beautiful, glowing, supportive, loving, silly, crazy mother. 

She is so much more than a plastic flower.

But on October 13th I won't have her with me. She will be there in spirit but I can't go hug and kiss her afterwards and tell her how successful we were. I can't hold her hand and help her keep the pace of the course. I can't order her favorite Mushroom Pizza from Roosters and toast her with Dewars. I can't help her into her pajamas and tuck her in with nightlights. I can't touch her. Can't read to her. I can't hold her.

I can't call her. Hug her. Listen to a voicemail from her. Read an email from her. She was slowly ripped from me for seven years. I have no digital reminders. 

She is gone.

Alzheimer's took her from me. She was 69. My kids are 3 and 7. It isn't fair. I need her so much right now. I'm an exhausted working lonely mom and I need her so much. I have questions that only she can answer. I need a hug. I need a girls weekend. I need MY MOM. 

I hate asking for money. Fundraising is exhausting. Especially year after year with no breakthroughs to mention. I do this because I am scared to death I will develop this disease. I do this for Amelie and Ford. I do this for the hundreds, YES hundreds, of messages my lowly little blog gets about people or friends of friends going through this same diagnosis and needing advice. I do it for all of you. It is going to affect you in one way or another. 

Please consider donating to my Walk to End Alzheimer's team. I am a motherless Mother. It is a lonely and sad place to be in your 30's.  

My Mother was the brightest light with the biggest heart. She loved all of you. And she meant it. And I do this to continue her legacy.

Monday March 19, 2018

Around 6am I rolled over in bed (for the 20th time) and unplugged my phone and did the morning scroll. I heard Dad come down the steps from his room upstairs with Gumbo the Boykin bounding behind him. The garage door opened and the two set off for their daily morning walk around the mountain.

Shortly after I heard the kitchen door slam open and my Dad's panicked voice yell out to my brother and I, his voice echoing off the post and beam built cathedral ceilings.

Beau! Katharine!

She's gone, 

She's gone! 

He opened my bedroom door still with his headlamp shining his dark morning red light. "They just called, she's gone! Let's go!" We didn't cry or hug but all raced to get dressed as fast as we could. Dad ran upstairs and I washed all my zit cream off, Beau still putting on his pressed chinos while he was running to the car. 

I don't remember what we said in the car that morning. We probably should have called for a police escort at the speed we were going. I know Dad said "I should have been there" and we quickly stopped that thought. I told Dad there is no way she would have died if his beating heart was in the same room as hers. The nurse that had called Dad said that "BB has taken her last breath while I was in here checking on her, she is at peace and now fully healed".

Hospice will tell you again and again that this is normal. We could have stayed in there with her forever and at the first meal break or coffee run she would go. Sometimes people like to leave on their own. 

I wasn't sure I wanted to go into her room. I have never seen a deceased person, and wasn't sure it was an image I was emotionally prepared for. Especially not the person that had brought me into this earth with her own body. My mother, whose blood runs through my veins.

We opened the door and she lay still and quiet. The nurses had moved her on her back and prettied up her hair. Her eyes were forced closed but her mouth was open (something you can't prevent). Her hands were clasping each other and resting on her stomach with her rosary and two flowers in them. 

It was a beautiful and peaceful sight. And one that I will never ever be able to get out of my mind. My last glimpse of my mother. My beautiful loving mother. Holding flowers as if she was going to walk down a church aisle for a wedding.

I did what any Boylan would do and slowly removed the carnations out of her hands and replaced them with purple tulips from my birthday flowers. Dad smiled and said that's a good daughter.

Her head was still warm and I kissed her goodbye. We all sat and stood there for quite some time. 

The amazing Todd (that I have mentioned frequently in these last posts) arrived shortly after, called by Alice Myer to let him know what had happened. We prayed over BB and sat in the quiet, making decisions and started calling people once 8am rolled around. 

Dad stayed busy calling while Beau and I messaged friends. If I had any advice I would make a list of most important people to call. I thought I had everything covered but of course we forgot a few. Friends had already started posting pictures and Beau and Dad agreed on a facebook post to let the rest of the world know. I probably posted it too quickly but I didn't want people to see the comments that were rolling in. I know people have a love/hate with social media but it truly is the best way to get information out in the fastest way possible.

We packed up her things, her bear, her pillows and her picture frames we had brought and loaded up the car. We kissed her goodbye and made arrangements with the Crematorium and we left Elizabeth House.

We would never visit my mother again. Never hold those hands, never kiss her forehead, stroke her hair, whisper that we loved her. We wished for her to be made whole again in heaven, but had no idea how much we would miss those moments here on Earth.

The rest of the day and week we went into planning mode. I will begin that on a separate post. 

I didn't cry that much that morning, I teared up but the adrenaline of preparing for 200 of our closest friends and family coming to town took over. And that adrenaline would carry me until her funeral, and immediately wear off afterwards. 

But after we went out to lunch and stopped into Gardener's Cottage our friend Libby came running through the door with tears streaming down her face and the floodgates opened. Mom was like a second mother to Libby and Gardener's Cottage was probably one of her most favorite places in Asheville. I walked the store and every single thing in there speaks to me. It is like a part of Mom is still in the store, straightening books, smelling candles, deadheading plants, tiptoeing through the tulips.

It will now always be a place I can connect with my Mother. And it is a beautiful place for such a thing.

March 13th-Moving to Elizabeth House

These posts obviously aren't in order but they all tell a part of our story and I felt they were each important to still write.

Thanks to Mom's adorable hallmate with tourettes and the sensitivity of stopping forcefeeding (a very important post on this will come soon) it was suggested that we move to Hospice's private home, Elizabeth House. While Mom was on a no more food/liquid by  mouth diet she still was receiving meds with applesauce and some shakes for other meds and they "no feeding" was a very gray and tricky area to try to discuss with staff. Moving her to the private home would be much easier to navigate with orders like this.

I headed up to Asheville on March 11th to spend time with Mom and see how her status was. I came back to Charlotte Tuesday b/c Max wanted to take me out for my birthday (Wednesday). Tuesday dad called asking about moving Mom. The idea of moving her from a place she had known for two years first made me panic. She had only ever left Aston Park for a seizure and head injury, and then for breaking her ankle/foot. And also once for a hair appointment that I brought her to (but ended up being a horrible idea). What I would give to take her out for ice cream now.

My only real concern would be if she would be okay with the move. Would she panic? Would it cause her to decline even faster? The hospice nurses assured us this would be okay and they would sedate her for the move. 

The last time I saw Mom in Aston Park she was wide eyed and alert. She didn't smile much on that Monday or talk but we prayed over her and did a modification of last rites (as people in this state can supposedly still hear us, but I wonder if she could understand us). This would be the last time she looked at me. 

Dad called Tuesday and sent pictures of Elizabeth House. Her move went smoothly and she was resting comfortably in her new room. It is a beautiful facility in Hendersonville near Flat Rock, a 30 minute drive from his house but such a more serene place for BB. 

We had a private room with adjoining bathroom. There is a common area between our room and the next that leads out to a patio with chairs. We didn't have a neighbor after our first two days there so had this whole area to ourselves. 

I cannot tell you what a blessing being at Elizabeth House was. I drove back Friday morning and brought Mom the birthday flowers a sweet friend had dropped off at my house. (Katie they got so many compliments!) Her room was huge, with a big window and bird feeders outside. I wish I had gone earlier. I wish I had climbed in bed and napped with her. 

Dad and I went out to lunch in Hendersonville at West First and then stopped in McFarlan's bakery (the best in NC) and I promptly broke into tears. I always went to Hendersonville with Mom to the Curb Market and then to McFarlan's. This was our thing. She couldn't stay away from the bear claws and I'm a sucker for the dinosaur cookies. We headed back to sit with Mom the rest of the day. Mom had strong vitals even though she was mostly unresponsive so they told Dad to get a good night's sleep at home.

Saturday we were back early in the morning and our best friends Tommy and Alice who sat with us the entire time. I held Mom's hand, told her I loved her and that it was okay to go. We went out to lunch and shared some laughs and praise God my brother hopped on a flight and arrived by 4pm. Tommy and Alice you will never know what your friendship has meant to us throughout this illness. And Beau, I know your March was a sh*tshow but you coming up Saturday made your little sister very very happy. 

Mom was re-positioned every 4 hours and given pain meds through a port in her leg. She was sleeping peacefully the entire six days at Elizabeth House. We monitored her vitals hoping for a sign. We had no idea how long this would last. Doctors and nurses met with us regularly trying to decipher her stats and where we were on this final approach. So many friends had told us that oxygen below x means y, or that pulse means this or that blood pressure means that. None of it really makes sense. Mom was a healthy young woman with the exception of this horrible f*cking disease. There was no telling how her body would slowly shut down.

Saturday her status wasn't good, and her breathing had started the "death rattle" what my friend Scott has nicely renamed the "travel rattle" so Dad spent the night. Usually they might be able to tell you when you have hours left but there is no perfect science to this. Beau and I drove home and came right back early in the morning.

Sunday was a long day. Her stats dropped all morning and we all felt we were close. Our dear friends the Elmores brought us lunch and the MVP Gaines Myer snuck in Zing Zang and vodka. I almost drove to Ingles for some cheap wine because Sunday was torture. Alcohol is prohibited at Elizabeth House but promise they could have copper bird feeders in the hundreds if they had a bar. Thank you to the friends that continually texted me through that. Even though the place was quiet and beautiful and attentive it was absolutely draining. The doctor came to talk to us around 3 and said Mom still had a strong pulse and that we could possibly even have hours to days left. Looking back now I should have been thrilled. But we were exhausted and emotionally spent. Dad decided to come home with me and Beau. Before we left I gave her a rosary I found in her dresser. I'm assuming it was hers or her mother's. She was raised Catholic and I thought maybe this was something she needed to pass through to the next world.

That was the last time I would see my mother alive.

An Update on BB-March 5th, 2018

Hundreds of minutes on the phone and countless texts and emails and we came to the decision. Prayer and faith led us here, along with what we knew Mom would want. She would not want to be in this state. She would not want to be force fed baby food. She let us know this when she filled out her advance directive.

Yet is is still so hard to say out loud. To tell your hospice team, we want you to stop feeding her.

But the bottom line, and the thought that keeps me from a guilt avalanche, is that we need to do what BB wanted. BB would want you to stop feeding her. That is why her body cannot swallow, why her body is slowly turning off the computers, dimming the lights, closing the door.

And she did not want this.

As of yesterday Mom is no longer receiving food or water. They will keep her  mouth moist (maybe with Dewars?) and keep her completely comfortable. Being the court jester I have been for the past 7 years I told my Dad, "I'm the one that brought the morphine Mom!" Her doctors are all in agreement, they have seen this before and this is not agony for them, they know where she needs to be. And it is not on this Earth riddled with this horrible disease.

To Ford and Amelie and Max, please be the one to rush to this decision. It has been agony for us. But I'm telling you now (and updating my paperwork at Northwestern Mutual) that you SHALL withhold life prolonging measures if I have a terminal diagnosis. And especially if I am in depends, in a hospital bed, and away from my loved ones.

Alzheimer's is the cruelest way to go. And it is our duty to let her leave with as much dignity and comfort as humanly possible.

We don't know the timing of this. I'm a basketcase because I'm worried about the Alzheimer's Gala this weekend (we still have spots at our table!) and how I don't want to let them down. Or let my friends down that have bought tickets.Or let Ford down on his slime themed birthday party wishes. But truth be told I want to curl up in my childhood room and sleep while we wait.

But....I'm a Mom, and in this sandwich generation..... so I need to forge ahead with daily life.

I want to thank you all for continuing to read these updates. They are hard to write at this phase but I don't want to let any of my ALZ followers down. There is no manual for this and I want to be as honest as possible about how this all unfolds. If you think our decision is wrong, and that we should let her lay motionless in a bed all day, please keep those thoughts to yourself; especially if you have never witnessed a visit.

All of my love,

Katharine

**Family I sent an email yesterday morning regarding this. If for some reason you are not getting those updates and reading here please send me your email.

What I Want to Remember

One of the worst things (and there are a LOT of them) with Alzheimer's is that your most recent memories of your loved ones aren't the ones you want to keep. I'm talking about the bathroom trips, the screaming, the irrational behavior. And of course you know that it's not their fault, and not them, but that is what is freshest in your mind. You have been losing this person for so long you don't have voicemails, texts, even emails from when they were themselves. 

A good friend told me that once they die, that all the good memories come flooding back. Both for them and for you. I certainly hope this is true. The other night I was up working late and poured a glass of wine (bottle) and forced myself to think about each phase of my life and to try to remember how Mom was back then.

Birthday Parties-My cakes were always over the top. Not the crazy confection productions of today, but Doberge from Gambino's, Pink cursive writing and sugar flowers from Ingles, where ever they were from they were always gorgeous. My parties had themes (not like today's Pinterest, but in a totally 80's way) and were always a big production. Scavenger hunts (for either gold coins because St.Patty's Day or for eggs b/c early Easter). Doilies for snacks, the silver would be polished, flower arrangements on all tables. She always made birthdays a big deal. Even as a teenager. She took all of my girlfriends and I to Joe's Crab Shack (this was Asheville in the 90's, and this place was LIT) and then to a Matchbox 20 concert. My freshman year of college we went down to Palm Beach and bought so many goodies from C.Orrico and Loehmann's. (Remember that place?) Sunbathed and ate too much. I wasn't spoiled rotten but she knew how to celebrate people.

Ballet and Tap-She would take me to Fletcher School of Dance every Saturday morning and help me get my hair up and always packed this parachute material blue bag with a white bear on it with all the perfect goodies. She would sit up in the waiting room and read while I took dance, sometimes watching through the window. Every Saturday for YEARS this was our routine. (Until our Nancy Ball visits at the Hendersonville Farmer's Market) And when I no longer enjoyed dance I tried Cheerleading and the coach was so mean she yanked me right out of there. She was my guardian and my protector and if she didn't like something she showed her teeth. I remember (very vaguely) swimming lessons when they just threw you in the deep end. I remember staring at the black line on the side of the pool (where they make the T) and she grabbed my hand and got me out of the water. I still to this day cannot freestyle swim and have a legitimate fear of the black lines. 

Sick-When I was eight years old I got so sick and nobody could figure it out. I was rushed to Urgent Care and they tried to make some horrible accusations and she and my Dad let them have it. They were the best health advocates and because of them my Dad's buddy finally took me for an X-ray and realized I had a kidney stone that had become lodged and my kidneys were shutting down. I was in the hospital for three weeks and she spent every day there only leaving to take walks down Biltmore Avenue. In College I got the flu and it was so awful, she came to Chapel Hill and put me in a hotel room (she worked for a chain of assisted living centers and they had one there) and nursed me back to health with movies and the only type of care a mother can provide.

Hostess-Most of you know that Dad was the Chef, but she was the behind the scenes beautifier. While he made the most delicious food, she made the most beautiful flower arrangements, the most inviting house a home, and greeted any guest as family. My friend Sallie from High School has the best comment on how coming over to my parents' house was and I'm trying to track it down so I can update it here.

Mom-Above everything else she was my Mom. She wasn't June Cleaver. She didn't bake and wasn't head of the PTA. She brought Pizza and diet coke as Tennis Mom when clearly bananas and Gatorade were more needed, but that was her. Irreverent and exquisite. The day I told her I had had sex she wasn't mad, she was excited for me. And if I felt guilty over it she said sex is like hats, you put them up in the closet and forget about them. Hysterical...only BB. Her responses allowed us to have an open conversation about anything in life. Oh the things I wish I could talk to her about now. 

She came to visit me in College and would always take me to the store to load up on food, and then the liquor store to stock my bar. She knocked on doors of my guy friends and offered to buy them beer and pizza if they would help us with furniture. (Remember this Phil and Pat?)

Proud-The day I got into Carolina she must have bought the entire section of UNC gear at Dick's along with 30 balloons and decorated my room while I was at a Rotary Meeting. They called me (on my car phone) to say I needed to come home right after my meeting b/c my room was a mess and they had company arriving. She loved surprises like that. 

She would scream Smoke Em Smoltz at my tennis matches. I wasn't #1 but she made me feel like I was. Not in a participation trophy kind of way, but in a way that I knew she believed in me.

That is what I want to remember. And just typing it all out brings back so many wonderful memories. She was a card sender, a note writer, a care package sneaker, a flower giver, a flower arranger. She did the little things, the things that mattered. As I got older she would offer me the shirt off her back if I complimented her on it, if I liked her earrings?? She would send me a matching pair. She would do anything for anybody. She was an includer, a lover, the ultimate giver. I never went to Disney as a kid, but I didn't need it. I had my own magical fairytale in my mother.

Tough Questions-An Update on BB February 9

I have debated posting about this but I want to stay true to my mission of being transparent about this disease and the process around it.

Mom is being spoonfed baby food, as she has since her swallowing issues began last Fall. Dad sent me a picture on Sunday that really just hurt my heart. She was almost asleep but still being fed her entire meal while wearing an adult bib. (see below)

This is nobody's fault. This is standard protocol. It is a horrific gray area in the course of this disease. Should she be being fed like this? Should she even be being fed? Does she feel hunger? Thirst? We know that if she stops eating she will die.

So making decisions about this directly affects when she will die. 

These decisions are hard. And guilt ridden. I have lost sleep. I have had dreams about these decisions. 

But we need to remember the most important thing. What would and what did she want?

It wasn't until yesterday that we looked up her advance healthcare directive (something we all need to have) and she specifically stated that if she has advanced dementia her directive is that her healthcare agent may withhold life prolonging measures/supplements.

And then you have to put yourself in her shoes. My parents used to joke that they wanted the pillow. If they were to be put in a home, just give them the pillow instead. It's a horrible and cruel saying but Mom worked in long term care for years and she saw. She knew. 

So at this point by feeding her what are we prolonging? She no longer recognizes us. She is in pain sometimes from her osteoarthritis so she has to be on pain medication. Smiles and "I love yous" are a rare occasion. I am so damn glad my kids got a smile from her last visit. She would not want to be like this. 

Hospice has been incredible. I reached out via email to ask them what they thought and they have this way of wrapping you in comfort with their words. They know these feelings, they have seen families beat them self up over even uttering these words. But they know in their hearts what is best for the patient.

I am thankful that my brother and father and I are so close throughout this process. We have a sense of humor that is helping us lighten the load. You should see how horrifically ugly urns are these days. If you can't laugh at a tacky airbrushed urn and how she would curse us for the rest of our lives if we picked one of those out........ then you aren't going to make it through this.

I am also thankful her sisters and brothers all agree that she wouldn't want to be like this. She is their baby sister and it hurts them just as much to see her incapacitated and frail.

I love you Beau and Dad. We have been planning quite the celebration. And there will be Cheetos and Scotch for all.

If anyone riding in Iris can send me some Iris beads I would be forever grateful. She rode with her sister-in-law, Jennifer Boylan, and said it was one of the most fun things she ever did. (It's on my bucket list)

All Hail BB, Queen of Aston Park.